Reimagining Safe Sleep: Using Participant-Generated Photography and Community Insight to Address Infant Mortality Inequities in New York City

Abstract

Background:

Sleep-related infant deaths disproportionately affect Black non-Hispanic families in New York City, representing a critical perinatal health equity issue. Traditional safe sleep messaging can fail to reflect the lived realities of structurally marginalized communities, creating disconnects between clinical recommendations and caregiving practices.

Objective:

To demonstrate how participant-generated photography can reimagine perinatal care by centering Black maternal knowledge in infant safety interventions.

Methods:

We conducted photo-elicitation interviews with 30 Black non-Hispanic mothers of infants aged <12 months in New York City. Participants documented their infant’s sleep environments through photography (n = 86 images), which were then used to elicit in-depth interviews exploring decision-making processes and lived experiences. Selected photographs and quotes were incorporated as role-playing scenarios in training sessions with infant home-visiting staff.

Results:

Nearly all photographs depicted sleep environments with multiple risk factors according to traditional guidelines; however, participants demonstrated sophisticated reasoning rooted in love, survival, and contextual safety. Key themes included: (1) multiple caregivers and sleep locations reflecting housing instability and extended family networks; (2) daytime and unplanned sleep driven by work schedules and practical constraints; and (3) knowledge-practice disconnects, where mothers understood clinical recommendations but adapted them to structural realities. When used in staff training, 97% of 165 home visitors and health care staff found these authentic images to be helpful for identifying real-world risks.

Conclusions:

Participant-generated visual methods can transform perinatal care by revealing wisdom embedded in marginalized communities’ caregiving practices. Rather than viewing deviations as “non-compliance,” this approach illuminates how structural inequities shape infant care and points toward more equitable, community-informed interventions.

Introduction

The perinatal period is a critical window for addressing health inequities that affect families throughout their lives. Sudden unexpected infant death (SUID) in the United States is the leading cause of death in infants between 1 month and 1 year of age, accounting for approximately 3,700 infant deaths per year. ¹ SUID includes sudden infant death syndrome (SIDS), accidental suffocation and strangulation in bed, and deaths from unknown causes during the first year of life. ² The risk varies significantly by race and ethnicity, with higher rates among American Indian/Alaska Native and Black infants than among White, Hispanic, and Asian/Pacific Islander infants. In New York City, Black non-Hispanic infants experience more than four times the sleep-related infant mortality rate of White infants. ³ This disparity exemplifies a failure of health equity, defined by the World Health Organization as “the absence of avoidable or remediable differences among groups of people,” ⁴ demonstrating how structural inequities extend beyond traditional prenatal and immediate postpartum care to shape infant health outcomes throughout the first year of life.

The traditional strategy to address SUID in the United States has relied on public awareness campaigns, like “Back to Sleep” and the “ABCs of Sleep”, which aim to change parental behavior. Safe sleep education has focused on universal messaging about sleep positioning, the use of pillows and blankets, and bed-sharing, with limited attention to how structural constraints shape caregiving practices. ⁵ This approach often positions marginalized communities as “non-compliant” for not following safe sleep recommendations rather than recognizing the complex reasoning underlying their caregiving decisions. ⁶ Such deficit-based frameworks fail to address the root causes of inequities and miss opportunities to learn from community wisdom.

Recent calls for reimagining perinatal care emphasize the need to center the lived experiences and knowledge of pregnant, birthing, and postpartum individuals in intervention design. ⁷ Photo-elicitation interviewing (PEI) offers a powerful methodology for achieving this goal by enabling community members to document and narrate their experiences and shift the power dynamics inherent in traditional researcher-participant relationships. ⁸

This study explores how participant-generated photography can transform approaches to perinatal infant safety interventions by revealing the complex intersection of love, structural constraints, and survival strategies that can shape Black maternal caregiving practices. By centering on maternal wisdom and challenging deficit-based narratives, this study points toward more equitable models of perinatal care that honor community knowledge while addressing systemic barriers to infant well-being.

Theoretical Frameworks

Reproductive Justice and Structural Racism

We situate this work within a reproductive justice framework that recognizes the right to parent children in safe and dignified contexts and communities. ⁹ Reproductive justice moves beyond individual choice to examine how structural inequities, including racism, poverty, and housing instability, constrain parenting options and shape family well-being.

Structural racism operates through multiple mechanisms that affect Black families’ caregiving environments: residential segregation concentrates families in under-resourced neighborhoods with substandard housing, discriminatory lending practices limit homeownership and housing stability, and punitive child welfare systems create surveillance-related stress that shapes interactions with health care providers.^10–12

Decolonizing Knowledge Production

Traditional public health approaches may position academic and clinical knowledge as superior to community wisdom, creating interventions that can fail to connect meaningfully with the intended populations. ¹³ Photo-elicitation methodology disrupts these hierarchies by enabling community members to serve as both documenters and interpreters of their experiences and perspectives.

This approach aligns with decolonizing methodologies that prioritize community knowledge, shared authority, and transformative, rather than extractive, research relationships. ¹⁴ By centering mothers as experts on their own experiences, the PEI approach creates opportunities for mutual learning that can inform more culturally responsive and structurally aware future interventions.

Methods

Study Design

We employed a participatory photo-elicitation design to explore the infant sleep practices of Black mothers in New York City (NYC). Participants were recruited through purposive snowball sampling to include diverse experiences of the Black Diaspora. The inclusion criteria required participants to be Black mothers (or primary caregivers) with infants under 12 months of age, and: (1) identify as Black non-Hispanic, (2) be primary caregivers for infants under 12 months of age, and (3) reside in NYC.

This study was approved by the City University of New York (CUNY) University Integrated Institutional Review Board. All participants provided written informed consent prior to participation. Specific procedures were implemented to protect participant privacy and ensure ethical management of participant-generated photographs.

• Participants received detailed information about how photographs would be used, including potential use in research presentations, publications, and training materials.

• All photographs were assigned numerical codes disconnected from participant identifying information. Digital images were stored on password-protected, encrypted servers accessible only to research team members. Photographs selected for publication or training underwent review to ensure no identifying information was visible.

• At the end of the study, a separate photo consent form required participants to choose to give permission for all images for use for non-commercial purposes in connection with the study, to give permission for some images (specified by assigned code), or to refuse permission for use of any photographs.

Photo-Elicitation Protocol

Participants received digital cameras (or used their phone cameras) and instructions to “take 20 photos that show us how your baby sleeps” over 1 week. This open-ended prompt intentionally allowed mothers to define what they considered relevant to understanding their infants’ sleep beyond just the immediate sleep environment, thereby avoiding the imposition of researcher-defined categories. As a result, participants documented various aspects of their infant’s daily routines, caregiving contexts, and family life that they felt were important for understanding their infant care practices.

Follow-up interviews occurred 1–2 weeks after the photos were taken. Participants selected 10–11 images that were printed on-site using a portable photo printer. The photographs were numbered and used to prompt discussions, guided by questions like the following:

“Tell me about this photo”

“What does this photo make you feel?”

“What can and can’t we see in this image?”

“What’s happening outside the frame?”

These prompts encouraged storytelling and contextual interpretation while honoring participants’ narrative sovereignty. Interview responses were audio-recorded and transcribed verbatim. Digital images of the participants’ selected and numbered photographs were collected and matched with their corresponding interview narratives for analysis.

Of the 307 total photographs selected by participants across all interviews, 86 (28%) directly depicted infants in sleep environments. The remaining photographs captured related contexts such as caregiving spaces, daily routines, and family interactions that provided valuable contextual information for understanding infant sleep within the larger environmental and social framework. All photographs informed our holistic understanding of the caregiving context, though the primary analysis focused on the 86 photographs showing actual sleep environments and their corresponding interview narratives.

Analysis

We analyzed the sleep-related photographs and interview transcripts using reflexive thematic analysis. ¹⁵ We conducted data familiarization through a review of the photographs and multiple readings of the transcripts and documented our initial observations and patterns of the data. We then developed codes for the visual elements in the photographs: sleep surfaces (e.g., cribs, beds, and sofas), infant positioning (e.g., supine, prone, and side), and bedding types and arrangements. Transcripts were coded to identify maternal factors, environmental and social constraints, cultural beliefs and practices, and safety considerations. Next, theme development grouped related codes and identified recurring patterns across datasets. The themes were then refined and named.

We carefully examined the contextual factors visible in the participant-generated photographs and systematically integrated these visual elements with the corresponding narrative data from the interviews. This process involved a detailed comparison of photographic evidence and interview transcripts to identify both consistencies and discrepancies between what was visually documented and what participants described. Such triangulation enriched our understanding by validating the narratives through visual confirmation and highlighting areas where lived experiences might have diverged from or complicated the images captured.

Throughout the analysis, we employed reflexivity by continuously reflecting on our personal biases, assumptions, and positionalities as academic researchers. This critical self-awareness helped mitigate potential interpretive biases and ensured that our thematic development remained grounded in the participants’ perspectives rather than being shaped by preconceived notions. Peer debriefing sessions were conducted regularly during the analytic process, providing opportunities for collaborative reflection, challenges, and validation of emerging interpretations. These discussions enhanced the rigor and credibility of the findings by incorporating diverse academic perspectives and fostering methodological transparency.

Through iterative comparisons across the participants and their photographs, we developed comprehensive themes that encapsulate both the broader structural conditions influencing infant sleep practices and the knowledge systems that mothers employed to navigate and adapt to safety recommendations within their unique lived realities. This thematic framework captures the interplay between social determinants of health such as housing instability, socioeconomic pressures, and cultural contexts and maternal decision-making processes, revealing how caregiving practices are shaped by a nuanced balance of safety, comfort, and practicality.

It is important to note that member checking was not conducted in this study because of the researchers’ constraints and concerns about additional burdens on the participants’ time, as two in-person visits were conducted to collect the data. While member checking can enhance validity by involving participants in the verification of findings, these limitations necessitated a reliance on reflexive thematic analysis and peer debriefing to uphold analytic rigor.

Finally, to effectively convey the essence of the participants’ experiences and perspectives, we selected one representative quote to accompany each photograph. These paired visual and textual elements were chosen to best capture the core meaning and emotional resonance of the participants’ responses, thereby honoring their narrative sovereignty and providing a rich, multidimensional account of infant sleep environments.

Integration of Photos as Training Materials

A sample of six photos and quotes from the sample was integrated into the training materials for use in the NYC Department of Health SUID and safe sleep education training sessions. This training is required for all home-visiting staff and has been provided since 2013 by one of the authors (M.H.) to health department staff, community-based organizations that work with families, and staff from family shelters across New York City. The presentation was mostly didactic, consisting of local data about sleep-related infant injury deaths and recommendations on how to prevent them that the participants used when they worked with families. The prevention messages came from established sources, such as the American Academy of Pediatrics, and focused on infant sleep position (on the back), sleep location (crib or bassinet), and removing all excess bedding. The presentation was revised in 2023 to add photos and quotes from this photo-elicitation study and was integrated at the end of the didactic training as scenarios where the participants role-played and practiced how to deliver messages to prevent sleep-related infant injury (suffocation) deaths.

All training participants were required to take a pre- and post-test on their knowledge of preventing suffocation deaths to receive their certificate of completion. From April to June 2023, three close-ended questions were added to the post-test: (1) how helpful they thought the photos were in identifying the risks, (2) how helpful the quotes were in understanding the mothers’ perspectives, and (3) how useful it was to practice their responses to families. The post-test questions related to the use of the photos were aggregated, and basic frequencies were calculated for each response.

The integration of participant-generated photographs into the NYC Department of Health training sessions represented a knowledge translation activity and was not a formally evaluated intervention. The post-test responses reflect how the training participants perceived the helpfulness of using the photographs to visualize real scenes of infant sleeping situations and not an outcome evaluation. The longer-term effect of how using community-informed training materials affected infant sleep safety outcomes is recommended for future studies.

Results

Participant Characteristics

The final sample included 30 Black non-Hispanic mothers who were primary caregivers of infants under 12 months in New York City (see Table 1). Participants represented diverse backgrounds within the Black diaspora, including African American, Afro-Caribbean, and African immigrant communities. Ages ranged from 18 to 34 years. Educational backgrounds varied from high school diplomas to graduate degrees.

Table 1.

Demographic Characteristics of Participants (N = 30)

Characteristic	n	% or M (range)
Mother’s age (years)	29	30.8 (19–42)
Race/ethnicity
African American	10	33.3
Afro-Caribbean	8	26.7
African immigrant	12	40.0
Mother’s education
Less than HS/HS/GED	10	34.5
Some college/college degree	19	65.5
Mother currently working	14	46.7
Infant under 6 months old	14	50.0
Infant is mother’s first child	7	23.3
Average number of residents in household	28	4.6 (2–10)
Receives government assistance (WIC, SNAP)	26	89.7

M, mean; HS, high school; GED, general educational development; WIC, Special Supplemental Nutrition Program for Women, Infants, and Children; SNAP, Supplemental Nutrition Assistance Program.

Prevalence of Risk Factors and Contextual Reasoning

Of the 86 photographs included in the analysis that depicted the infants in their sleep environments, nearly all included sleep environments with multiple risk factors, such as soft bedding, adult beds, prone positioning, and bed-sharing, according to guidelines from organizations such as the American Academy of Pediatrics and the Centers for Disease Control and Prevention. However, maternal narratives revealed sophisticated reasoning underlying these practices (Fig. 1).

FIG. 1.

She had him on her chest and I thought it was the perfect moment.

Image Narrative: “My mother was putting him to sleep, and I really appreciate her, and I tell her that often because I have a lot of pressure, I am stressed out and want to pull my hair out, like, oh my gosh, it’s a lot! So uhm my mom just took him that day and she just started singing to him. She had him on her chest and I thought it was the perfect moment.”

This quote illustrates how practices labeled as “risky” can serve multiple functions: providing maternal stress relief, strengthening intergenerational bonds, and meeting infant comfort needs within the context of limited support systems.

Theme 1: Multiple Caregivers and Sleep Locations

The photographs revealed a diverse range of sleep locations for infants. These locations included cribs, adult beds, pull-out couches, and the arms of family members. Rather than indicating inconsistent caregiving practices, this multiplicity of sleep environments reflected several structural realities that families face. Housing instability was a key factor contributing to the variety of sleep locations. Many families reported moving between the homes of relatives or temporary accommodations, necessitating flexible sleeping arrangements for their infants. Extended family networks also played a significant role in determining infant sleep locations. Grandmothers, siblings, and other relatives often provided essential childcare support, resulting in infants sleeping in different locations depending on their caregivers. Additionally, parental work schedules influenced the use of multiple sleep locations and caregivers. The demands of varying work shifts and long hours often required families to rely on a network of caregivers, each potentially providing a different sleep environment for the infant. These findings highlighted the complex interplay between socioeconomic factors, family structures, and infant sleep practices of the participants (Fig. 2).

FIG. 2.

I always put like a hat on his head and cover his eyes with it and it helps him fall asleep.

Image Narrative: “This was in the summer. He doesn’t have on like his pajamas and stuff because it’s like hot in the apartment so I just uhm just put like a light sheet over him to cover him with and usually like, when he goes to sleep like since he was a baby like I always put like a hat on his head and cover his eyes with it and it helps him fall asleep…he’s like knocked-out sleeping on the uhm it’s like a pull-out couch.”

This description demonstrated the adaptive strategies for managing temperature regulation and infant comfort within housing constraints, revealing practical knowledge that is often absent from the clinical recommendations.

Theme 2: Daytime and Unplanned Sleep

Infants’ daytime and unplanned sleep patterns differed significantly from their nighttime routines. Approximately one-third of infants depicted as sleeping were asleep during the day. Infants often fall asleep unexpectedly because of fatigue while feeding, playing, or traveling. This unpredictability challenged caregivers in managing infants’ sleep schedules and daily activities. Caregivers often adopted pragmatic approaches, allowing infants to sleep in convenient locations to balance their needs and household tasks. Environmental factors, particularly ambient neighborhood noise management, temperature, and space limitations, significantly impacted daytime sleep quality and duration. The flexibility required to accommodate unplanned sleep, coupled with the need to maintain a semblance of a routine, presented a unique set of challenges for caregivers. This balancing act between structure and adaptability in infant sleep management emerged as a key theme in understanding the complexities of infant care among the participants (Fig. 3).

FIG. 3.

He likes to sleep on his stomach . . . when he's on his back, he mainly is when he's waking up.

Image Narrative: “He likes to sleep on his stomach. So he will roll over to his side, but he doesn’t – when he’s on his back, he mainly is when he’s waking up.”

This observation reflected mothers’ detailed knowledge of their infants’ preferences and developmental patterns regarding sleep positioning.

Theme 3: Knowledge-Practice Disconnects and Adaptive Safety

Although mothers were aware of safe sleep guidelines, they frequently modified these recommendations in practice. These alterations were not acts of defiance but rather carefully considered decisions based on risk-benefit analyses and the study’s specific contextual factors. Maternal emotional investment in managing infant sleep necessitated practical adjustments when ideal recommendations conflicted with infant comfort or family circumstances. Mothers sought to balance adherence to clinical advice with the realities of daily challenges, including financial constraints. In response, mothers developed personalized approaches to safe sleep, integrating elements of official guidelines with pragmatic solutions. These decisions were informed by their understanding of fundamental safety principles, aiming to maintain infant safety while addressing practical considerations. This theme illustrates that mothers neither disregarded nor blindly followed guidelines but actively adapted recommendations to suit their unique circumstances, striving to ensure both safety and comfort for their infants while considering their overall familial needs (Fig. 4).

FIG. 4.

I don't actually put her on her tummy unless she's being supervised.

Image Narrative: “She likes to be on her tummy to fall asleep, but I heard it’s not actually good for the kids to sleep on their tummy. So I don’t actually put her on her tummy unless she’s being supervised.”

This quote illustrated how mothers modified recommendations based on their understanding of the underlying safety principles, creating hybrid approaches that balanced clinical guidance with practical constraints and infants’ needs (Fig. 5).

FIG. 5.

Both of y'all want to be on the bed. Whatever. So I put them down.

Image Narrative: “I actually put him in the crib, because I knew he wasn’t going to want to be in there. So I put him in the crib, but then he didn’t want to be in the crib. So I was like okay. So both of y’all want to be on the bed. Whatever. So I put them down.”

A mother of three relied on her own experience with raising her children over the official recommendations when it came to infant sleep position: “For me, I know they always say to put them on their back. That’s the best and stuff. But I feel like they’re going to choke to death on their backs. I’m sorry. I feel – I don’t get why they want them on their back…I always thought on their stomach was the best. I did it with all, all of my boys went to sleep on their stomach. They didn’t even like their backs actually, because when they were on their backs, they [were] up.”

This narrative revealed the emotional labor involved in sleep management and the pragmatic decisions mothers made when ideal recommendations conflicted with their perceptions of their infants’ comfort, safety, and family harmony.

Community Knowledge as Training Resource

When incorporated into professional safe sleep training programs, participant photographs and narratives enhanced providers’ understanding of the complexities and realities of infant sleep situations in New York City (see Table 2). Among the 165 training participants in the 9 separate sessions, 97% reported that the authentic imagery helped them identify the risks of infant suffocation.

Table 2.

Feedback from Safe Sleep Training Participants on Use of Participant-Generated Photographs (N = 171)

Survey item	n	%
How helpful were the photos to identify risks for infant suffocation?
Somewhat helpful	5	2.9
Very helpful	166	97.1
How helpful were the quotes from mothers to understand their perspectives?
Somewhat helpful	14	8.2
Very helpful	157	91.8
How useful was it to practice your responses to families about safe sleep during the training?
Somewhat useful	6	3.5
Very useful	165	96.5

Furthermore, the inclusion of participant narratives alongside photographs provided crucial context, helping providers understand the reasoning behind the various sleep arrangements. Of the safe sleep training participants assessed in the post-test survey, 91% responded that the quotes were “very helpful.” In addition, 96% responded that practicing their responses based on the authentic images and quotes was useful and “very helpful.” This deeper insight into family decision-making processes enabled health care professionals to develop nuanced and culturally sensitive strategies for promoting safe sleep practices.

Discussion

Reimagining Prevention

This study suggests that deficit-based approaches to infant safety may inadequately address the structural factors contributing to health inequities observed among participating families.^16,17 Traditional messaging assumes access to resources (dedicated nurseries, consistent housing, and full-time caregivers) that may not reflect the realities of structurally marginalized families.^18,19 Participant narratives demonstrate that mothers possessed sophisticated knowledge of infant safety principles but adapted recommendations based on their structural constraints and their observational expertise. ²⁰

Despite caregivers’ awareness of safe sleep recommendations, actual practices often diverge from the guidelines.^21,22 Even when parents understand the recommendations, implementation varies due to infant needs, family demands, and conflicting information regarding the recommendations.^23,24 Rather than “non-compliance,” these adaptations represent intelligent responses to complex circumstances. ²⁵

The success of integrating participant-generated photographs and quotes into safe sleep training in New York City suggests that incorporating authentic, community-sourced materials into professional training programs may be beneficial in other urban settings facing similar challenges related to infant sleep safety. By bridging the gap between clinical recommendations and real-world circumstances, this method has the potential to improve the effectiveness of public health initiatives and can possibly contribute to better outcomes for infants and their families in the future. The health impacts of using participant-generated photographs in perinatal settings extend beyond what the present study alone can demonstrate, and more rigorous evaluation designs will be needed to confirm measurable improvements in provider practice and infant outcomes.

Structural Interventions and Trust-Building

The findings from the participants’ narratives underscore the complex interplay between structural factors and caregiving practices. ¹⁶ Housing instability and poverty emerged as significant influences on caregivers approach to infant sleep safety.^6,26 Addressing these root causes necessitates a shift from individual-focused interventions to broader structural changes.^27,28 Ensuring access to safe and stable housing with appropriate sleeping spaces for families is a critical first step to address this issue.^29,30 Developing trust-based relationships that prioritize support over surveillance is essential to reduce caregivers’ fears of punitive measures and encourage open communication about caregiving challenges. These structural interventions have the potential to create a more supportive environment for caregivers, ultimately enhancing infants’ safety while sleeping.

Photo-Elicitation as Transformative Methodology

This study demonstrates the transformative potential of participant-generated photographs in perinatal care research and interventions. ³¹ By positioning mothers as visual storytellers and knowledge experts, PEI disrupts traditional power dynamics in several ways.^32,33 First, it challenges deficit narratives by revealing the wisdom and intentionality underlying practices that are often dismissed as problematic. This approach allows for a more nuanced understanding of maternal behavior and choices within specific contexts. Second, like Photovoice, PEI enables mutual learning by creating opportunities for health care providers to gain insights from community expertise. ³⁴ This bidirectional exchange of knowledge can lead to more effective and culturally sensitive care practices. ³⁵ Additionally, the use of visual narratives builds empathy and understanding by humanizing complex circumstances. ³⁶ Through authentic visual storytelling, health care professionals can gain a deeper appreciation of the lived experiences of mothers from diverse backgrounds. Finally, the PEI informs the development of culturally responsive interventions by providing rich contextual insights into the needs and preferences of mothers. This methodology allows researchers and practitioners to design more effective and relevant perinatal care strategies that resonate with the communities they serve. ³⁷

Implications for Reimagined Perinatal Care Models

The insights generated through this research point toward several principles for reimagining perinatal care to promote health equity.

Community-Generated Knowledge Integration involves the systematic incorporation of community wisdom into intervention design, recognizing families as experts in their own experiences and circumstances. Photo-elicitation methodology has been demonstrated to effectively center community expertise in health intervention development.^5,9 In the present study, mothers’ photographs and narratives revealed sophisticated caregiving strategies that balanced safety principles with structural constraints, such as one mother’s explanation: “She likes to be on her tummy to fall asleep, but I heard it’s not actually good for the kids to sleep on their tummy. So I don’t actually put her on her tummy unless she’s being supervised.” This demonstrates how mothers modified recommendations based on their understanding of underlying safety principles while accommodating infant preferences.

Structural awareness of how racism, poverty, housing instability, and other systemic inequities shape caregiving practices should inform interventions that address root causes, rather than individual behaviors alone. Reproductive justice frameworks emphasize that parenting practices cannot be understood separate from the structural conditions that constrain family options.^6,7 Participants in this study illustrated these constraints through images and narratives of varied sleep locations driven by housing instability, such as the mother who described her infant sleeping on a pull-out couch due to limited space and summer heat in her apartment. The weathering effects of structural racism on Black families’ health and access to resources have been well-documented. ⁷

Non-Judgmental Engagement and Trust-Building training for providers should encourage them to approach families with curiosity rather than judgment and to build relationships that prioritize support and collaboration over surveillance and compliance monitoring. Research on perinatal care equity emphasizes the importance of trust-building approaches that counter historical medical mistreatment of Black communities. In the present study, 97.1% of trained providers reported that participant-generated photographs were very helpful for identifying risks for infant suffocation, and 91.8% found maternal quotes very helpful for understanding family perspectives. Additionally, 96.5% found it very useful to practice their responses to families—using actual quotes—during the training, suggesting that authentic community-generated materials may enhance provider learning and communication skills.

Adaptive and Contextual Safety recommendations should acknowledge diverse circumstances and provide guidance for managing competing priorities within constrained environments. Traditional universal safe sleep messaging has been critiqued for failing to account for structural constraints families face. ² The present study revealed how mothers demonstrated adaptive safety strategies, like the participant who explained managing multiple sleep locations across caregivers and the mother who utilized intergenerational support (“My mother was putting him to sleep and I really appreciate her…I have a lot of pressure, I am stressed out”) to meet both infant safety and maternal wellbeing needs within her available resources.

Visual Storytelling and Narrative Medicine approaches, such as incorporating participant-generated imagery and stories into provider training and intervention development, would enhance empathy, understanding, and cultural responsiveness. Photovoice and photo-elicitation methods have been shown to humanize complex circumstances and reduce deficit-based thinking in health professional education. ³³ The present study demonstrated this effect directly: training participants noted that seeing actual family environments (rather than stock photography or staged demonstration), increased their understanding of family circumstances, with 97.1% finding the photographs very helpful for identifying real-world risks.

Operationalizing In Perinatal Care Settings and translating these principles into practice requires concrete changes at multiple levels of the perinatal care system. At the provider level, clinicians and home visitors can incorporate open-ended questions about the structural realities of families’ daily lives into prenatal and postpartum visits, creating a trusting space for caregivers to share the constraints that shape their infant care decisions. Safe sleep education itself can be reimagined to move away from compliance-framing and toward collaborative problem solving; providers might ask what a safe sleep environment looks like in the family’s home and what support would be needed to improve it. This study suggests that authentic, community-generated images and narratives embedded within role-playing scenarios can serve as an accessible and low-cost approach to build provider capacity. At the systems level, these findings support calls for policies that address the upstream structural determinants such as housing insecurity, poverty, and inadequate support networks that directly constrain families’ ability to implement safe sleep recommendations.

Limitations and Future Directions

This study was conducted with a specific population (Black non-Hispanic mothers in NYC) and focused on one aspect of perinatal health (infant sleep safety). While the methodology and findings offer insights relevant to broader perinatal care equity efforts, their generalizability to other populations and health issues requires further investigation in future studies.

While this study provides valuable insights into the infant sleep practices of a sample of Black non-Hispanic mothers in New York City, its findings may not be fully generalizable to other populations or geographic settings due to the specific cultural, socioeconomic, and urban contexts. The structural contexts that shape infant sleep practices in an urban setting, including housing instability and neighborhood noise, may differ from those faced by Black families in suburban or rural areas.

The use of purposive snowball sampling introduced the possibility of selection bias and may have attracted mothers who were more comfortable discussing caregiving decisions with researchers. Participants who chose to share photographs of their infant’s sleep environments may differ in important ways from those who did not participate. These limitations underscore the importance of interpreting this study’s findings within the specific social, geographic and methodological context in which they were generated. Additionally, the focus on infant sleep safety limits the applicability of the results to other perinatal health domains. Future research should examine diverse populations and broader perinatal topics to validate and extend these findings to other populations.

Future research should also explore how photo-elicitation and other participatory visual methods can address additional perinatal health topics, including prenatal care, breastfeeding support, postpartum mental health, and access to contraception. Longitudinal studies examining the impact of community-informed interventions on health outcomes and provider-patient relationships would strengthen the evidence base for these approaches.

Research examining how structural interventions (housing support, economic assistance, policy changes) interact with community-informed educational approaches could provide insights into comprehensive strategies for addressing inequities in perinatal health outcomes.

Conclusion

This study demonstrates how participant-generated photography can transform perinatal care approaches by centering the wisdom and experiences of structurally marginalized communities in the United States. Rather than viewing deviations from clinical guidelines as problems to be corrected, this methodology reveals the sophisticated knowledge systems that families employ to navigate complex circumstances.

The Black mothers who participated in this research demonstrated awareness of infant safety guidelines, as evidenced by their explanations of the adaptations and modifications they made to accommodate their circumstances and experiences. Their visual narratives challenge deficit-based approaches and point toward more equitable models of perinatal care that honor community knowledge while addressing systemic barriers to health and well-being.

Reimagining perinatal care to promote health equity requires moving beyond individual behavior change approaches to embrace interventions that center on community wisdom, address structural inequities, and build relationships of trust and mutual respect in the community. Photo-elicitation methodology offers a powerful tool for achieving these goals, creating opportunities for transformative learning that can inform more just and effective approaches to supporting families during this critical period of life.

The path toward reproductive justice and perinatal health equity requires that we listen deeply to the wisdom of marginalized communities, learn from their strategies for survival and thriving, and work collaboratively to create conditions that support the flourishing of all families. This study offers an example of how such collaboration might unfold, pointing toward possibilities for transformation grounded in community knowledge, mutual respect, and a shared commitment to justice.

Authors’ Contributions

T.W. and M.H. contributed equally to the conceptualization, methodology, investigation, formal analysis, writing—original draft preparation, writing—review and editing, and visualization. T.W. led project administration, supervision, and funding acquisition.

Abbreviations Used

CUNY

City University of New York

GED

general educational development

HS

high school

M

mean

NYC

New York City

PEI

Photo-Elicitation Interviewing

SIDS

Sudden Infant Death Syndrome

SNAP

Supplemental Nutrition Assistance Program

SUID

Sudden Unexpected Infant Death

WIC

Special Supplemental Nutrition Program for Women, Infants, and Children

Cite this article as: Wong T, Hackett M (2026) Reimagining safe sleep: Using participant-generated photography and community insight to address infant mortality inequities in New York City, Health Equity, 2026, 10, 24731242261475105, DOI: 10.1177/24731242261475105.